It’s Been a While…

So, I haven’t posted anything to my site in a while, and sadly it was unable to be avoided. That’s one of the shittiest parts about CF if you get sick or rundown, there’s no toughing through it, you just have to endure…until its run its course.

Well, for me the past several months have absolutely SUCKED. I have had one problem after another, and rundown at its worst. So, I’ve been biding my time, and recovering as best I could.

While I couldn’t really do anything physical or even much of anything, I have been thinking about EVERYTHING a lot…and I think that’s one of the things about CF that’s strange. I’ve been told many times over my life that I have an “old soul.” And I’m guessing most CFer’s have as well. I think it’s a given when you have so much time to contemplate EVERYTHING. It forces you to “age, or grow up” faster than the average person.

Throughout my while life I’ve had older friends, I’ve dated people who are usually older than I am. And not purposefully…but, more out of a desire to have someone I can relate to better, they just so happen to be older.

So, being that the last few months have been difficult, I’ve been trying to figure out a way to accommodate life around being sick, and its not easy. I have however discovered a few things that may make it easier as I get older, if I get “older.” (not trying to be morbid, just realistic).

The Best way I can describe what I’ve been thinking about is simplicity, I need to develop my life around a simple set of needs, wants, belongings, activities, etc..

So, I have decided I want to look into the “Tiny House” movement, and find a way to work in some sort of field where I can do most of my work from home, it will probably be the only way I keep a semi-normal life…

Anyway, I have been sleeping very little and am trying to get this post up as a re-entrance into my posting schedule, as I’ve been out of the loop for so long now.

For that I do apologize, I wish it wasn’t this way, but it is…for now at least. So, to those who have read and posted in my absence I appreciate you greatly, and any new viewers I thank you for taking the time. it means a lot to me to be able to reach even the small number that I do.

Hopefully everyone has had a good summer, and enjoys the season change as much as I do…but, for now, have a good rest of the week and I’ll be posting more frequently now, hope you enjoy. Thanks again for stopping by!

Fellow CFer’s…breathe strong! And stay healthy!

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The Return…

So, it has been a pretty long time since I’ve posted anything, I haven’t been doing too well health wise, but trying to keep my spirits up.

I had some really bad CF rundown, and then a week ago I had a broken tooth extracted…that’s 3 now in less than 2 years, ughhh!

But, I don’t want to let this blog go stagnant, however I have to admit it has been low on my list of priorities, especially being in pain and not being able to take pain medicine…I don’t know if I’ve mentioned this before, but I have had a problem with pain meds in the past, doctors will fuck you up if you’re not careful…

Anyways, I’m doing a good bit better now, still not totally healed up, but on my way for sure…hopefully!?

After my Mollie girl left us, I had a pretty rough couple of weeks, then an extraction and now I’m finally starting to come out the other side, but its a bitch to say the least.

However, I am a strong willed person and I wont let things defeat me anymore, besides killing me I’m not gonna stop. So, good…but, kind of morbid I know, lol…

Well, I just wanted to get back into the swing of things and get y’all updated on my situation…im not dead…lol! I hope everyone has had a good spring break, Easter, or anything you’ve been up to really…

And finally, I will be posting regularly again, and am actually thinking about upgrading my site subscription for some different benefits and more personalization, maybe starting to branch out a bit and see how it goes…so wish me luck!

Thanks for reading and hope everyone is doing well!

– Will

 

Watchathon Week!

So, it’s been a rough time for me recently, if you’ve read any of the recent posts…the few I have made…you will know I’ve been sick, my dog had to be taken in to be put down, and all kinds of horrible shit.

CF life is terrible in and of itself, but when you get even one thing extra that adds pressure, stress, angst, pain, anything really that isn’t easy to deal with it gets really f#cked up. Everything becomes exponentially harder.

So, there are certain times when it isn’t as hard because something (an outside variable) makes stuff easier to disregard.

Well, this week is watch-a-thon week on demand, with X-Finity…I live in an area where the cable company I have really has a monopoly on the area. It sucks sometimes, but there are benefits, and I am currently in the middle of one of those benefits: “watch-a-thon week,” it basically opens up the channels like Starz, Showtime, etc. you can either watch shows that you don’t have access to unless you pay for the particular channel, or you can watch the movies on demand on those channels. It’s pretty cool, it lasts about a week, and it allows you to catch up or watch stuff you wouldn’t get to unless you pay for those premium channels, which I don’t…lol.

Well, that’s what I have been and will be doing for the next couple of days, and I will be watching a bunch of movies, and maybe some cool TV shows I don’t know yet, i’ll figure it out when I run out of movies I want to watch, if that happens.

Right now I am watching a movie called “Freaks of Nature” it’s like a mix between “Can’t Hardly Wait, Final Destination, and Twilight/Walking Dead”…lol. Pretty funny, and a crazy vampire/alien/zombie/human integration movie…nice!

Anyways, hope all is well with everyone, and have a good week!

Beard Trim Bound

It’s almost 2:20am and I’m still up and I’m pissed! I have been having a great f@cking day, now I woke up this morning feeling about the same as usual…but around 11:30am I got a boost of energy so I decided “hey I just got some new glasses the other day, so lets go get a hot shave and beard trim” so I get in the shower get my self going grab a couple boosts and I’m out the door.

I called ahead to the barbershop, Friends Barbershop up in the Johns Creek area, they told me to come one in they could get to me shortly. So I get up there, I was gonna have to wait for a bit, so I grabbed a drink and a magazine and waited for my turn in the chair.

Not too long and I was in the chair getting the barbers cape thrown over me, so I told them what I wanted and they went to work, cleaned up my beard, trimmed and straight razor complete! I’m paying and out the door, as I get out to the car my phone starts having a stroke, lol…then dead. Its done for. Luckily I’m right near the phone store.

So, I zip into Verizon and tell them what happened. they’re surprised the phone I had lasted me this long, apparently life span of smart phones is around 2 years…I’ve had my droid for almost 5…what can I say I have always taken good care of my things…part of the habitual OCD that comes with being a CFer. So, I plug it up at the store so they can see what’s wrong with it, and that it wasn’t something I did. Just wear and tear, so I look around for a bit, mind you I’m still a little behind on the whole tech, social media, phones, all that mess world. I just have many other things that come first and stuff like that is secondary or more like vigenary (20th).  “And for the record the progression is: 1st = primary, 2nd = secondary, 3rd = tertiary, 4th = quaternary, 5th = quinary, 6th = senary, 7th = septenary, 8th = octonary, 9th = nonary, 10th = denary, 12th = duodenary and 20th = vigenary.” -oxford dictionary.

Anyways..lol…so pick out a new phone after looking for a bit, one of the things that bothers me about these smartphones I how big they all are almost like DVD cases. not to mention being $400.00-$800.00 for a damn cell phone, wow. But I find one that’s probably the smallest one in the store width, and height-wise. I get all my stuff backed up and transferred to the new phone, decide I wanna use it for a few days to decide what kind of case I want to get etc. So, they slap the couple extra per month onto my bill and test call me and I’m out of there. I will say they’re pretty damn efficient, even if they’re trying to upsell you until the second you set foot out the door, no worries its sales, I get it.

I stop by the “adult beverage store” as I’ve had a pretty long day and am gonna need a stiff one when I get home and decide to eat some dinner, we had soft tacos, one of my favs. And I continue on with my night messing with my new phone getting it set up just like I like/want. I get comfy in bed and then all of a sudden my stomach tightens up…”damn it I know what this means, so off to the bathroom…but, nothing happens, nothing happens, and still nothing happens. Now, I’m not gonna get to graphic but, I’m dying here straining, and turning red, lol. Well, after over an hour I say screw this, jump into a scalding hot shower and head back to bed, but with that feeling still, which is one of the worst…id rather be anything than bound up…ahhh. Oh well, just CF life.

Well, now its 3:20am and I’m still awake with a stomach ache, this sucks. hopefully ill be able to sleep soon, but who knows. So I sit here figuring out all the little peccadillos of my new phone, down to the background of my txt messaging screen…lol. Here’s the old OCD again, everything has to be PERFECT.  Moreover, balance, categorized, and even symmetrical, down to how many screens I can slide between…1 home and 2 on either side…you know cuz balance…lol.

BUT, its giving me something to do, so I’m cool with that. I have made my second adult beverage (wild turkey…just FYI) and am gonna find a good movie to watch…hope everyone’s weekend plans are set, and enjoy them!

GOODNIGHT!

 

 

 

 

 

Fighting Sleep

So, its almost 1am…I had pretty busy day today. From my last post you might have seen I thought I really fucked up my mouth (please excuse my vulgarity I’m half asleep and I’m just freewriting) .

Well, it turns out I didn’t do as much damage as I thought I did…I did break a tooth but I only knocked off a piece that was obviously pretty weak anyways, and it was on a tooth that has been giving me trouble for some time, as I have a pretty serious ADEK vitamin deficiency (thanks Cystic Fibrosis). But, I didn’t mess up any of my other ones when I crunched down on it, or at least as far as I can tell I didn’t. Not to say it didn’t suck, and hurt like hell, because it did! But, if I get in to the dental office in the next couple weeks I should be able to get it handled, or that’s what I’m hoping.

However, I sucked it up and passed out last night because I had stuff to do today. A bunch of stuff that again I have been putting off because I’ve been feeling shitty lately finally got done…yay!

I went to the eye doctor and got an exam and a new pair of glasses. And hopefully in a couple weeks ill go back and get some new contacts as well.

I went to the Verizon store because my phone is glitching  like crazy and in a few days I’m gonna go back and pick up my new phone! I’ve had the same one for about 5 years, and since I found out today smartphones only have about a 2-year shelf life, I got a pretty good amount of use out of it.

I stopped by the grocery store to stock up the mini fridge I keep in my room, when I’m too tired or weak to go downstairs this thing is a lifesaver. I keep things like Gatorade’s, yogurt, waters, applesauce, sandwiches (that I make 3-4 at a time and put in baggies) and some drinks: chocolate milk, OJ, ginger ale, etc.

Then I went back and picked up my glasses, as I didn’t realize they had a 1-hour glasses thing I was super excited since for a few weeks I’ve been wearing a pair that is superglued together after I dropped them and then stepped right on them, on a wood floor no less ahh…lol.

Anyways, all in all it was a pretty good day, even though I still had my regular CF pain and stuff: stomach aching, tight chest, coughing up a lung, however, I didn’t have to puke in any bushes from coughing…so that’s a win in my book.

Then I got home and had some dinner, then a couple of oranges, and a bunch of grapes…yummy! Played some PlayStation: NBA Live, and Call of Duty…tomorrow I may whip out the Skyrim. as I don’t have a job currently I have a good bit of free time. Which to be honest Is good because of how sick I’ve been.

Now, I’m sitting here watching Washington vs Arizona State…fighting my heavy eyelids so I can get this blog post up. In the hopes that NIKE, PLAYSTATION, or some other commercial entity will somehow see this and decide they want to sponsor me or have me as a brand ambassador…lol…hey I can dream right?

Hope y’all had a good day, and a have a goodnight!

 

 

 

Dave Matthews Band

It’s almost 3 am, and I’m sitting here watching some basketball, listening to “Louisiana Bayou”…wide awake, and bored as hell.

I just went and checked out what the Dave concert coming to my city in May had left tickets-wise…I usually get lawn seat anyways so it shouldn’t be a problem. But, I don’t know how I am going to feel come 5/31…which sucks. Especially because I’d rather have a seat that doesn’t make me super sore afterwards…yay for CF…lol.

I’ve been to several of the concerts in the past ten years…maybe 3-4 and I love it, he’s one of my favorite live musicians by far…but, getting sicker as I am I don’t know if I can make it this year, and that bums me out.

If you’ve been following my blog at all you know I have Cystic Fibrosis, and that I’m trying some new avenues of approach in life, income, activities in general…and basically my approach to being sick all the time and only getting worse, as CF is a progressive degenerative disease.

I haven’t blogged in a few days because I’ve been going through some rough shit, all kinds of unexpected health stuff, family stuff, and just random things that when added on to the already heaping pile of shit on my plate, is like the straw the breaks the camel’s back. I know I complain a lot but I guess that is what this blog is for me…a way to share my pain with people without having to pay a therapist, or annoy my limited number of friends to the point that they want less to do with me than they already do. Its pretty lonely having a genetic disease that restricts your ability to participate in the lives of the people you’ve grown up with and call friends.

So, like I said I just got of Ticketmaster, and am thinking if I can get a family member to “birthday purchase” me some tickets I may go, but if not, I probably wont be able to…sad. I sound pretty f#cking pathetic tonight…I must say. Whatever though, like I said I use this as an outlet so I don’t go nuts keeping it all in.

I am still in the process of trying to find some sponsors or companies that want a CF patient as a brand ambassador, but so far…no luck. Which is ok, I didn’t expect it to happen fast, if it ever happens at all. But, damn…lol. I could use some help in a major way.

If you know anyone looking for a person to sponsor, or if you know a company looking to do some philanthropy, or even a store looking for a brand ambassador…please pass the information along to me, or give them my email: pmma85887@gmail.com. I would be grateful. Also, me and a comedian buddy are going to start doing a podcast, something like “CF kid and the Canuck” or “Laugh at my Sickness with me.” We haven’t started yet, so it’s still in developmental stages obviously, but again, any ad placement or capital would help move things along. And, like I’ve said before compensation will be met with advertising, and promotion…I’m trying to set up some partnerships! Keep me in mind…

Anyways, as I haven’t posted in a while I’ll quit my whining, and get back to the usual…here are my CF Life hack’s, and tip’s of the day:

CF Life tip of the day: Don’t neglect your physical appearance, I have been guilty of this frequently, not getting haircut’s, or wearing sweatpants out…keeping yourself looking good, even if you don’t feel good, can in and of itself boost your mood, and give you a mental edge. As well as dressing nice, it definitely makes you feel better about yourself, and boosts your self-image.

CF Life Body Hack # 5: Sleep with your body in a fixed position, using pillows, keep your head above your torso, this will keep mucus from draining into the back of your throat, which makes it much easier to breathe throughout the night, also, it doubles as keeping reflux from making its way to your esophagus as easily…which with something like CF can literally wake you in a panic thinking you’re having a heart attack…it’s incredibly beneficial. Try it!

Super Bowl, RISE UP Falcons!

This is my second blog today, but it is Friday, and it is also a couple of days away from the Super Bowl. Now, I’m not a huge NFL guy…my sport is basketball, and my addiction/hobby is Golf, lol. However, I enjoy the fact that my city’s team is going to the ship! It’s been a while, so it’s nice, especially since it is one of those things that brings us together as a group of like-minded citizens, of the same community, all pulling for the same outcome. It’s a great thing to witness the crap we see, and deal with on a daily basis put aside for the love of the game.

So, hopefully I am going to be going to a buddy’s house down in the city of Atlanta to see him for a bit, probably watch the first half with him and his wife, as well as a few close friends. Then I am going to be heading back North to around where I live where a good family friend is throwing a Super Bowl block party, and it should be a lot of fun. Also, a few of my fraternity brother’s are going to be there with their wive’s, and being that I don’t get to see them often I am very excited.

Now, I am going to give a quick few tips about doing things like this with a condition like CF, or anything that requires lots of medications and making sure certain things are present or available. So here goes: Don’t stuff yourself the day before a day when you are going to be eating and drinking a lot, you will feel less lethargic and have more energy for the big day. Wake up and turn on some good music, music that you like to jam out to. Straighten up your surrounding a bit, as returning to a nice clean house/room is very pleasant, and reduces stress. Exercise! You will be eating and drinking a lot during the day of the game, usually “junk food” type stuff, and soda’s, beer, etc. This will give your body a good start to the day, and make room for all that good grub! After you get dressed, grab an extra change of clothes, just in case you spill a drink or sit on a plate of wings. Also, get all of your stuff together and load it up, then look at it a couple of times to make sure you have all of the things you need. After that, just get yourself ready and head out. Drive carefully, as the drunk folks will be out, in high numbers. But, enjoy the day, the game, the company of good friends and family, and the experience as a whole…getting to a Super Bowl is a big deal, everyone will be elated, and this will rub off on you.

Well, that’s about it for the Super Bowl festivities, and the day in general. Like I said, I hope everyone has a great time, and gets to watch a good game of football. To my Falcon fan’s RISE UP and let’s win this thing!!

CF Life tip of the day: An empty bottle cleaned and dried out, then lined with a plastic baggy is a great way to carry a re-usable spit bottle around. When you’re almost full, zip the baggy up, and throw it away, then put in a new one. Boom! Now you have to only bring 1 bottle for a day, and off to the races…you’re good to go for the whole day. For the cost of a couple plastic baggies.

CF Life Body Hack # 4: Keep a couple of small bottles of honey around the places you spend most of your time. It is an incredible superfood, and it tastes great! Also ,it is not possible for honey to go bad, it just crystalizes. If that happens stick in next to your body in your pocket for the body heat or pop in the microwave for a few minutes, and back to liquid it goes. It can coat your throat if you cough a lot, your esophagus & stomach lining if you’re having a lot of reflux. Alongside all of that it is great for a quick healthy pick me up, just pour a couple of spoonful’s down your gullet, and go about your day. Enjoy!

Good Morning…kind of.

So, it’s only 10:30 and I’ve been up for about an hour. This sucks, lol, and after last night’s attack I kind of wanted to get more than 3-4 hours of sleep, but obviously that’s not happening. Well, this is pretty routine like I said in my last post…so, I’m sitting here enjoying a STRONG cup of coffee, and listening to some Dave. The fact that I’m used to this is telling especially since I just deal with it like any other day, while trying not to allow previous stress to creep into me after I’ve bypassed whatever is stressing me out…like an attack in the middle of the night.

Well, it is early and I’m still kind of trying to get my bearings, and shake off being pretty exhausted. On a positive note it feels like a did 1,000 crunches last night, and that’s cool…I guess…haha, ahhh! So, I’ll probably mess around until I’m awake enough to get some food in me, and rinse off the soreness in a scalding hot shower. Funny what the human body can become accustom to after it happens enough.

I’ll probably do another post this afternoon/evening sometime. So, I hope everyone has a great day. Again, if you’re following these blog posts I very much appreciate it. Spreading some knowledge about the unseen aspects of this invisible illness called Cystic Fibrosis is very important to me, and your help means a lot.

Jammin Out!

Not too much is better than catching an old song you haven’t heard in a while…that nostalgic feel comes rolling in almost pulling you back into that time totally.

I have been trying to add some different stuff to my blog to reach a wider variety of readers, pull them in hopefully then they’ll see my other stuff, and start following my site or Twitter, etc. So, today I’m sitting here going through old Facebook posts, looking at old pictures, and jamming out to tunes back from college days, and there isn’t much of a better feeling than getting into that groove. I love it!

I had a rough couple of days there with the CF, but am feeling a bit better today, and in a bit I’ll have to go run some errands. Catch up on the pile of shit on my overloaded plate, and try to taper back on the overflow of procrastinated chores of daily life with or without CF…but, I revel in these days, the days that allow me to look back at the previous and realize I do have GOOD days, and they aren’t all BAD…it’s hard to pull yourself out of the moment when a day is bad or when stuff isn’t going your way. However, when those good ones roll around it makes you appreciate them that much more. So, if you’re having a bad day, week, month…just try to keep your head up and press on. Hopefully at some point it will ease up and allow you to enjoy the good, but appreciate the bad for allowing your to notice the good. And, with that I am going to go try to knock out some of these errands before the other shoe drops…lol. Hope everyone had/has a good day!

CF Life tip of the day: pick up a pack of sterile rubber gloves next time you are at the pharmacy…put a couple in baggies and keep some in your car, your favorite jacket, etc. The next time you have to pump gas, or use a public restroom, slip the gloves on and cut down on the chance that you’ll get some kind of nasty bacteria, or germs from stuff. Especially because people are so ignorant about good hygiene. It’s a huge stress reliever when you need to do something and there the gloves are…less worry!

CF Life Body Hack # 3: Feeling tired, or just out of it, having been sick the previous day? Go get a hot shave from a male hair salon. They will hot towel your face, head, and neck, use a straight razor with all the accoutrements of the trade…it is amazing how much a hot straight razor shave will improve your mood. Also, good grooming habits tend to make you feel better anytime. Enjoy!

Reluctantly, here it goes…Help me breathe??

I have been trying to figure out a way to keep my health in good standings, with Cystic Fibrosis that is a huge undertaking. Many times it seems impossible, so with extremely deep reservations I am going to do this, something I have been thinking about for a while, frankly very scared to put myself out there. However, I reached a point of no return, I have to do this to keep taking care of my CF…I need some help!

So, I have created this blog site, a YouTube channel that is in the works, a Twitter account, and am in the process of checking out other platforms. I am trying to get some corporate type sponsorship’s to assist me in the endeavor of taking care of my Cystic Fibrosis. The financial strain on my family and myself is too great, I have no other options. I am wanting to get my health back to a place where it is not controlling every aspect of my life, but with CF that’s a very touch and go situation. I basically cannot afford having CF anymore, and desperately need some assistance. I have done some research and decided the best way to go about this was a sponsorship type situation. Basically, I want to try to get sponsored to document my transformation from being extremely sick all of the time, to getting myself back to where I was 10-15 years ago. With a little luck, and a lot of help from the business/professional community at large, I am hoping people will see this and want to take action in helping to fight this nasty disease called Cystic Fibrosis, to help me breathe…

I’ve put a lot of thought into this, and it is really the only way I can put my focus on my health, as doing so requires the other things in my life to take a backseat. I am trying to find sponsorship for things like food, medication, doctor/dental expenses, living costs, transportation, and daily expenses in general. I am not usually one to ask for help, in fact most times I will suffer in silence, but this is as much for my family as it is for me. They need a break, they deserve a break, they deserve to have some help. Since I cannot fully support myself and keep my health up at the same time anymore, and being that I don’t qualify for ANY State or Federal assistance (I have been denied every time since the age of 18) I am taking this leap of faith.

This isn’t in my normal character to ask for help, like I said…I’d usually just suffer, but I feel like this is an opportunity to shed some much needed light on things that are so rare they just don’t get as much attention as something like Cancer, or diabetes. Cystic Fibrosis is a death sentence without the right course of action, and as I keep getting sicker the clock is ticking. I want to show people that there is a way to accomplish things in life that seem like unbeatable hurdles. I want to let people see that being strong is a good thing, but if you need help asking for it can bring some people, places, or things out of the woodwork that wouldn’t usually be there. Hopefully it can be done…

So, if you know anyone in America or around the world who would be willing to help a CF patient fight this battle, and try to win their way back to healthy I am asking you to share this (my) story with them. I am going to do everything I can to get myself back to being in control, and I am going to document the process of going from sick —> not so sick —> damn that guy has Cystic Fibrosis?? I want to win this battle, but I need some help to do so…and, asking that is very hard for me.

I am reluctant to ask this, I know it’s kind of a strange request. But, I want to be able to say I did EVERYTHING possible to come out on top of this. To beat the odds is not going to be easy, but with some assistance I think I can do it! Thank you for taking the time to read this, just taking the time to read it means a lot to me. Any recommendation’s, question’s, suggestion’s are welcomed with open arms and a full heart…